Amanda Thorpe

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Posts posted by Amanda Thorpe

  1. Hello Nina Lynn,


    I never had kidney pain with the interstitial cystitis (IC) and it being a breech in the GAG lining of the bladder as opposed to an infection like standard cystitis I don't know how it could effect the kidneys. Your kidney pain was attributed to this initially but with systemic sclerosis (SSc) now in the mix it's worth making sure this was a correct diagnosis as SSc can effect the kidneys.


    With the arm problem I have not spoken to the rheumatologist about it yet as it has come up in between appointments, I see him again end of November and will discuss it then if it is still an issue. If he comes up with anything specific I'll be sure to pass it on.


    Take care.



  2. Hello All


    I am into my 7th side effect free month of Cellcept. My rhuematologist mentioned 1 to 3 years and when the disease plateaus and becomes inactive Cellcept will stop. This then assumes the disease plateaus and becomes inactive in 1 to 3 years but I have also been told this period can be 1 to 5 years. Guessing then you could be on Cellcept for 5 years.


    It must be a drug that can be used indefinately because organ transplant patients use it and they nust be on it for years or forever.


    For myself I will be on it until the disease plateaus which I hope will be within 3 years.


    Take care



  3. Oh Georgie I didn't know your doctors could drop you, that's outrageous, particularly when they're doing squat and getting paid for it! No wonder all the smart kids in the playground wanted to be doctors.


    It's rotten that you feel so ill, know what ails you and yet still await relief.


    Your health is worth perservering for, do whatever works for you and keep us informed. You are part of what makes this forum unique, someone prepared to share their difficulties with others.


    Take care.



  4. Hello Nina Lynn


    I am sorry your diagnosis is now definatley scleroderma but at least you now know what you are dealing with.


    As Peggy said you had a thorough working up which is always a good thing.


    I don't know about the hair loss as I never had that symptom. I can relate to the numbness at night although I get it in the hands and feet, most annoying as it's already hard enough to sleep in anything near comfort.


    Sorry I don't have any suggestions because that's what you have actually asked for! :unsure:


    Keep us informed and take care.



  5. Hello Sam


    How great to hear from you again, despite your difficulties you are always hopeful. I am also impressed because those areas of the house you clean twice a year, I have no doubt I never clean!


    Moving house is a stressful endeavour but I think moving on is always a good thing and there is always the excitement of a new home. I hope it goes well for you.


    I also hope you get your disability resolved, when you are battling ill health you don't need to battle for something you are entitled to nor do you need financial issues in the meantime. As I said to the phone company when they pestered me "I didn't wake up one morning and think hmmm I'm bored so I know what I'll do I'll get a rare, incurable, debilitating disease so I can't work anymore!" They didn't see the humour in it needless to say.


    Take care.



  6. Hello Georgette


    It's unacceptable :angry: that a year after diagnosis of diffuse SSc that you have had no treatment. Judy's right ditch the doctor. You can't simply wait on him whilst your symptoms are clearly progressing.


    Tests have to be carried out of course but that is not a reason to do nothing. I started treatment 2 months after diagnosis and that's only because I was diagnosed then eventually treated by different rhuematologists.


    I believe there is a link on this site showing sclero experts in different areas, it may be worth contacting the one near you.


    I do hope you get some results but you may have to become a "difficult" patient to kick start your current doctor. He wouldn't sit on his hands for a year if you had cancer and that's mostly cureable, sclero is not at all.


    Take care.



  7. Hello Gina


    I glad you now feel so enthusiastic about your treatment and care. There's nothing worse than knowing you have a problem medically and being ignored/dismissed out of hand.


    About 20 years ago I went to see a neurologist, supposed expert in his field that I waited months to see for chronic headaches. He told me to keep taking over the counter headache pills and try yoga. I laughed and walked out.


    Let us know how you get on.


    Take care.



  8. Hello Nina Lyn


    So you've been one of the family all along. I know actually being told you have scleroderma is a shock but at least you know what you are dealing with and your doctors can provide an appropriate care plan for you.


    I know I have said it before but there is plenty of life to be had after scleroderma barges in uninvited, it's just different to what you thought it would be.


    You already know support and advice is available here for you 24-7.


    I am sure I read in other posts that people with eosophageal issues prop themselves up in bed and get relief, if doing so helped your chest pain perhaps it was related to this. My mother has had 2 heart attacks and when having chest pain no propping up made any difference.


    Please let us know how you get on with treatnent etc.


    Take care.



  9. Hello Kelly


    I have been on Cellcept since Oct 07, I was given it as it is considered to be the most well tolerated of the immunosupressants.


    To date I can't hang any particular side effect on it and according to my sclero nurse I would have had them by now if they were coming.


    It has most certainly improved my skin tightening, it's still not like normal but any improvement means you feel better. As a result my mobility is better, although I still need walking aids/wheelchair but I don't look like Frankenstein's Bride when I walk anymore.


    I have just had a flare up in which joints became more stiff and skin tightened again, how much worse would it have been without the Cellcept.


    As far as I am aware I have no internal involvement apart from bowel issues so I assume the Cellcept is protecting my lungs etc as well.


    I had wanted to stop all meds, due to migraines, but did not because of how much worse I would be without the meds.


    It is a personal choice but remember that of the people that died from a brain infection whilst on Cellcept, none had sclero, they were transplant patients or lupus patients so would also have been on many other meds, their diseases had different courses and they had different factors in effect to what we have.


    Many people thrive on Cellcept, I believe I am one of them.


    I hope you make the right decision for you.


    Take care.



  10. Hello Jaxs


    Your son has the best advocate he could have, you. The alopecia itself is hard, my sister, who is much older than your son, is loosing her hair because of follicular lupus.


    It's always a mixed bag meeting someone else with scleroderma for the first time. It's wonderful to see face to face another human being living with the same disease you have but also difficult to see in the flesh aspects of the disease you don't have nor want. I am glad that overall it was a positive experience. I have certainly found meeting others tremendously helpful.


    Please keep us posted on how the appt on Thursday goes and I hope you get some good answers. :)


    Take care.



  11. Hello Michelle,


    I can't give any advice as I have only been on Cellcept.


    I did want to say that I find it amazing that you work 2 jobs , look after 2 kids and a husband, run the home and oh yes have scleroderma. In your spare time do you run around in cape and underwear saving the rest of the world? :lol:


    I am sorry you have no practical support on the home front as that's exactly what you do need. This forum will do all it can to provide advice, as it already has, support and a safe welcoming place to vent.


    Out of interest when my sister was married she raised 2 kids and a husband, ran the house, worked and studied to be a midwife. She would come home in the morning, from a night shift, to find the breakfast stuff in the sink with the previous evenings dishes, the children not ready for school including unironed uniforms and the husband ready for work and off he would go. Thankfully she was not ill then, she is now. I felt for that situation and I feel for yours. :angry:


    I truely hope you get the meds sorted out, please let us know how you get on.


    Take care.



  12. Hello Judy


    Aches and pains are not normal for anyone to have to endure


    How right you are!


    My husband and I were laughing today as we remembered how bizarre we behaved whien I was first becomig ill. When I said to my husband "look at this....." and showed him arms that would not straighten and wrists that would not move we would stare at the appendiges with the same sick fascination that makes people rubber neck car accidents but then continue on with our day. Looking back we both should have run around screaming. I had continuous pain so much so even sitting on a chair at work was a real effort, I would swap chairs throughout the day and carry on regardless. At some point I should have thought "hmmm this ain't normal". My staff would say "THERE'S SOMETHING WRONG WITH YOU" and I would wave a stiffened hand in the air, smile and change the subject.


    The skin on my garndmother's hands used to peel off, my mother had and still has continuous muscular pain but it's only since my diagnosed AI, then my sister's, that we looked back and realised mother and grandmother had them as well and I bet our aunts did also.


    I agree that if people/doctors did not assume that being in constant pain or having unrelenting symptoms is a normal part of modern living many more AI's would be diagnosed and much more quickly.


    Take care.



  13. Hello Ced,


    I am sorry you are having such a hard time of it. I don't have the same issue as you nor the degree of severity but I do now have bowel involvement and as Sheryl said, it can be so unpleasant. The day I realised I had been initiated into the painful world of bowel problems I put my head on the sink next to the toilet and promptly burst into tears.


    I have never heard of the BRAT diet but have heard of including rice, the idea is that it helps to absord the bad stuff and carry it out of the body. When my beloved puss cats were kittens they had "delicate" digestive systems and the vet opted for a natural approach, cooked rice in their food to absorb the bad stuff and take it out of the body. Well all I know is that the rice came out their bodies continuously whilst they walked around the house so they ended up confined to quarters.


    I do hope your doctor(s) give you some relief long term from this truely unpleasant problem and no doubt someone more helpful than I will chip in with sound advice. You do have my sympathy though.


    Take care.



  14. Hello All,


    My sister (follicular lupus) told me that an episode of House mentioned scleroderma because I (SSc) complained that they always mention lupus as a possible diagnosis.


    Needless to say I missed the episode but will keep an eye out for it.


    I think any coverage of scleroderma raises its profile and can only be a good thing. Yes I know some of the stuff verges on hysterical, the only programme I have ever seen about SSc was a few weeks before my diagnosis and in it the woman dies HORRIBLY so when I heard the S word from the reumatologist I naturally thought I was a gonner too.


    Definately not so.


    Take care.




    P.S. What happened to House after the police guy began stalking him and arrested him?

  15. Hello Rainbow


    Welcome to this forum, you will already have gathered from the other posts that you are in the right place to discover excellent information and share in personal experiences.


    I have diffuse scleroderma systemic sclerosis (SSc), diagnosed just over a year ago and I no longer worry about what may or may not happen because (1) I have no control over it nor does any other human being (2) worrying about it makes no difference to the outcome.


    Try not to worry about what may or may not happen, at present you have not been given a firm diagnosis of CREST so live accordingly. Even if, worst case scenario, you developed CREST in the future, there is ife, good life, after scleroderma, it's just different to what you thought it would be like.


    Apart from this site I would take what you read on the internet with a pinch of salt because, instead, as suggested, read the stories on this site about people living long and successfully with scleroderma.


    Please keep posting because it's better to express how you feel.


    Take care.



  16. Hello All


    My major itching came on prior to diagnosis so I suffered for a few months.


    I found that hydroxyzine (atarax) excellent in combination with low dose prednisilone to the point that the itching practically abated. However I weaned out the steroid and use ranitidine instead. Yes I know it's Zantac but a side effect

    of it is that it helps with itching. It's not as effective as the steroid but less side effects.


    I wash with a skin cream only and use another for topical application. Occasionally I use a steroid ointment rather than cream as the ointment stays on longer.


    Itching is a symptom that can drive you to distraction.


    Take care.



  17. Hello Leslie


    I am sorry the skin tightening is progressing and along with it the pain. I know that these two symptoms alone can debilitate you without any help from all of the others.


    Yes the skin imvolvement can peak, plateau, improve but you can aid this process with treatment and shouldn't just be left for the skin issue to run its course with nothing more than pain meds.


    My meds have definately slowed skin progression and I use an excellent pain killer that targets the nerve endings and as you know there are lots of nerve endings in the skin.


    I hope you get a comprevensive plan in place to deal with the skin progression as well as the pain and to this end you have the link Shelley provided.


    Take care.



  18. Hello Nina,


    Thanks for the reply.


    I was diagnosed with IC in 2005 (37 years old), finally! I remember at 19 being told by a Urologist I had an "unstable" bladder which actually means "I have no idea or interest in what is wrong with you so go away because I have lots of other patients to dismiss out of hand as well."


    I had instillations via cathater of Cystistat weekly for 3 months then monthly then every couple of months but how long and at what interval initial treatment is depends obviously on the individual. The idea is that once the lining is restored you go back for top up treatment when you have a flare up. Urasyst is the other drug commonly used but that did not work for me although they both rebuild the lining of the bladder which in IC becomes damaged.


    I last had an IC flare up in 2006 and after a few months of Cystistat was fine again. :)


    There are oral treatments such as antihistimines Atarax (hydroxyzine) and pain relief from Trammadol. I have not had a flare up since having SSc (2007) and it must be because I already take both of these as part of the SSc treatment.


    You'll know what a misery it can be having to visit the ladies every 20 minutes day or night when the IC is acting up :angry: so I hope this helps you.


    Please feel free to PM me if you wish.


    Take care.



  19. Dear Halimahab


    Like yourself my husband is a carer (mine) and rarely does anyone ask how he is. How are you in all this? It's great what you are doing/wanting to do for your sister but just remember that you are not responsible for what she does/does not do. All you can do is try to provide the best care you can obtain and clearly you are doing that.


    Encourage you sister to engage with other sufferers because there is real power in speaking to someone who is having the same experience and can speak with the authority that experience brings.


    For yourself this forum is here as for your support and guidance.


    Take care.



  20. Lizzie,


    I've been on Cellcept 11 months, 3 grams per day, no hair problems, it's nice and healthy :) . Have high and low lights done regularly. Lots used to fall out at the beginning of the disease when I washed it but not now.


    I hope you didn't find the Iloprost too arduous, I hated it.


    Take care.